Regina Dominican Grad Fights Cystic Fibrosis for her Daughter

When Lisa Tomassetti’s daughter, Livvy, was diagnosed with cystic fibrosis in utero in 1999, finding a cure for the disease became not just a personal cause, but one that she would share with her community.

“We realized that we had to do our part as far as fundraising for a cure for the disease,” Tomassetti said.

She started by participating in fundraisers for the Cystic Fibrosis Foundation. But Tomassetti decided she wanted more control over where her money went. In 2002, she founded her own not-for-profit organization, Liv for a Cure. Tomassetti grew up in Wilmette, and reached out to her alma matter, Regina Dominican High School, for help.

“I contacted them shortly after Livvy was born, and they embraced the cause,” Tomassetti said.

The school’s campus ministry has been organizing an annual benefit walk for 10 years, raising a total of $4,000 for Liv for a Cure. Nearly the entire school participated in the 2011 event.

The partnership with Regina Dominican proved to just be a launching pad for the organization. Liv for a Cure now holds several fundraisers throughout the year, including a rooftop party at Wrigley Field, a private party at the Governor’s Room at Arlington Park, a football party called “Tackling for a Cure” and “Liv’s Hunt for a Cure,” a geese and duck hunt in Lake and McHenry County.

Livvy, now 12, attends St. Joseph School in Libertyville and Tomassetti’s other two children go to Libertyville High School, and both schools have also joined in the fundraising efforts. Most recently the Libertyville boys’ basketball team sold “Layups for Liv” T-shirts, with the proceeds benefiting the organization.

The result is that Liv for a Cure has raised $290,000 for research and drug trials at the Cystic Fibrosis Center at Children's Memorial Hospital.

“It’s a lot of work,” Tomassetti said. “I have a lot of people that help me. They’re just friends and they’ve known our family for a long time, and they have just embraced the cause along with knowing and caring for Livvy too. I’ve been really lucky in that regard that I have so many people that are willing to help.”

Organization helped pioneer new medication

Liv for a Cure’s fundraising has already produced tangible results. The organization helped fund research into a new inhaled antibiotic that prevents bacteria from growing in patients’ lungs. Livvy has been on the drug for more than a year, and it’s reduced the number of times she had to be hospitalized.

Caring for a child with cystic fibrosis produces plenty of challenges. The genetic disease, which affects 30,000 Americans, causes mucus to build up in the lungs and other organs, resulting in frequent infections and problems breathing. Livvy was hospitalized four times in 2011.

“She has a lot of bumps in the road,” Tomassetti said. “Unfortunately a common cold can put her in the hospital. She has been hospitalized many, many times, but she kind of goes with the flow.”

Despite her hardships, Tomassetti described her daughter as a very normal kid.

“She enjoys life, and she doesn’t really let cystic fibrosis define her or her personality,” she said. “She plays basketball and volleyball through her school. She enjoys school a lot.”

As treatments have improved, the average life expectancy for someone with cystic fibrosis has increased from 32 to 37.

“Things have changed in her lifetime already,” Tomassetti said.

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